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02/27/2009 04:21 PM

True life experience with bile duct cancer patient

lynyssa77
 
Posts: 74
Member

Please only read this if you want to hear the truth about NON-RESECTABLE stage 4 bile duct cancer. I have done considerable research and have found that my experience with my brother, is very typical.

This information can be scary as the outcome is not favorable...so if you are newly diagnosed, please prepare yourself before reading on. This is meant for those searching for truth and actual experiences.

I wish I had words of comfort, but I do not. Our family did not know what was ahead for my brother and we all learned cold turkey, the hard way.

Every person is different, and every case is different, so do your research, keep your faith, and prepare yourself as much as possible.

My brother was diagnosed Oct 16, and he is now in his final days. He also was diagnosed as unresectable stage 4 bile duct cancer. His cancer had by this time spread to his lungs and liver.

First, he needed a stent placed in the bile duct to allow bile to pass normally (thus allievating the jaundice and itching).

After two months and two separate procedures, these stents did not work. Meanwhile, he got sicker and his liver worsened. He finally had to have a PTC (needle directly into liver to drain the bile that way).

Once that started working, he went in for radiation. That was not too bad and it did not make him too sick, but this is an aggressive cancer, and it did not work.

Meanwhile, cancer spread to lymph nodes, adrenal glands, and top of stomach. His liver worsened and his bilirubin count went higher and higher..thus he was now NOT a candidate for chemotherapy (which, by all my research, is ineffective anyway for this type of cancer - but your husband's case may be different).

He had MANY bowels problems...so check with the docs to get lactalose for stool softening and constipation relief. You will be grateful you did.

Meanwhile, my brother worsens..and now he has ascites all inside his abdominal cavity. Ascites is a build of fluid that my brother's liver and kidney can no longer process or flush out and it just stays in his body.

This has to be flushed out using diuretics or has to be drained with a procedure called PTC (another needle, in abdomen this time, to drain the ascites fluid).

Ascites is not poisonous as it's his own fluids, but it's very bad because it can easily cause infection and it's bad for the liver as well, and usually causes hepatic encepalopathy (disorientation, memory loss, other brain malfunctions).

Also, ascites is not curable, we can drain him all the time, but it builds right back up. It's like bailing water out of a boat that still has a leak.

We now are just trying to keep him comfortabe. We are told he has about two weeks left. I hear this scenario is pretty typical for bile dile cancer patients who cannot be operated on.

Time spent on radiation and chemo ought to be weighed with quality of life for time remaining. Example: Do you waste what time you DO have by sitting in a hospital getting treatments that probably won't work, or do you just treat the symptoms and alleviate discomfort with stents, PTCs, and pain meds and enjoy what time you do have left??

Thankfully, my brother is not in a lot of pain, and the pain he does have is managed very well by medicine. So..that's a relief to us.

I hope everyone else's case goes better, and I'm sorry if this discouraged anyone, it's not meant to. We wish we had some "honest" experience from others who had been through this so we could better prepare ourselves AND HIM.

All the best to every one... pray a lot...caregivers should keep rested and healthy...and let people help you. Everyone wants to....so let them.

Take care, Lynne A.

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03/27/2009 07:40 AM
jgaulin
Posts: 17
New Member

Hi Lynne: Here's an update: Well, another harrowing day at the hospital - 10 hours. Jerry felt good the first 2 weeks after the last biliary tube change. We did change frequency of pain patch to every 48 hours and that helped a lot. But just after, he sprung another leak in the tube.

I called the hospital and they guided me through what to do. Reverse flushes which were gross seemed to do the trick but he had several leaks here and there after which weren't quite as gross looking. I know. TMI! But we were waiting until his next hospital visit yesterday to do anything major again with the tube. In the meantime, Jerry was again fatigued and not feeling well.

Yesterday he was scheduled to either take the stents out or replace them and possibly remove the biliary tube. However, when the doctor saw what had taken place, he blew a cork. It's complicated but that maintenance visit a few weeks ago should not have taken place and he had to start from square one with "the plan."

Doctor came out after they inserted the new stents. They are longer and bigger on the left side (10) but had to stay with the 7 on the right side. They are longer and placed so that they go over the top of the obstruction to allow for better drainage. Doctor had a discussion with me that gave us a choice to try to go ahead and remove the biliary tube. Seems that has been in conflict with the stents. They haven't done it up until now because it's very traumatic to have to reinsert it into the llver again. I agreed. We should try this so that freakin' tube was removed.

Jerry is to have a liver function blood test Tuesday and then the week following. If the counts continue to go down, that is a good thing and the blood tests will be less frequent. Stents only last 6-8 weeks and he will have to have new ones put in at that point. We will watch him for any of the classic signs again like jaundice, fatigue or itching. We are praying this works. This will be an every 6-8 weeks thing until who knows when.

Because they have not yet proven cancer (and it may not be cancer despite the high blood markers), they will continue this. There has been no further growth in the obstruction. It is possible that the bile ducts will stretch on their own after awhile and no stents will be required. That yet remains to be seen.

Now the prayers are more important than ever. We are praying: 1) the stents work; 2) he will not show classic signs and his biliruben counts continue to go down. 3) the ducts will stretch on their own and we can stop this nonsense.

I can tell you this has been a very loooong six months for both of us. This up and down thing really wears on you.

Thanks again for hanging in there with us. I can't even begin to tell you what your love and support and caring has done to help us get through this. The visits, hugs, soups, cookies, flowers and other goodies haven't hurt either. We are again so fortunate to have the kind of friends and family we do have.

Also, Lynne, I did talk to the doctor about a direct to the liver biopsy. He could push for it but we are taking a huge risk of permanent damage. Because it has not been proven to be cancer and because the obstruction has not grown, we are choosing to leave thing as is for now and not push for it. I don't want to risk causing more damage at this point. Jerry is reasonably comfortable and able to function most of the time reasonably well. Cetainly not like before but....


03/27/2009 08:30 AM
lynyssa77
 
Posts: 74
Member

Gosh..your nightmare sounds all too familiar and I'm soooooooo sorry! I so feel for all you are going through..you and Jerry. It seems to be one procedure after another, and they only work a short period of time, and you're back again.

If the pharmacuetical companies make tooooooooo much money on "fighting" the disease that it makes finding a cure a bad business decision. Can you hear my cynicism?? I'm sorry, but it's true, cancer and things like whatever your husband has are HUGE money makers for the medical field. A cure would virtually put them out of business. It's revolting.

Anyway......a blockage...and high markers...all would indicate cancer...and I will NEVER understand why they can't get a good sample to test...seems ludicrious to me...but I was thinking...maybe it's something you don't really need to know..or want to know. So, I'll be quiet on that end. Finally!! SmileSmile

Because, if it's cancer, it won't be pretty, nor is it "usually" curable...so maybe you are WAY better off just enjoying the time you have together without knowing. Seems to me you're making good use of your time now and, in the end, that's all that really matters.

As far as his procedures...it's so insane to me that they make an already sick person go through major procedures every 6-8 weeks!! Seems they could do something to lessen that load and thus the impact on his body and overall health.and YOU. That's a LOT of procedures to ask of an ill person.

The PCT...it's not major (if we're talking of the same thing). It's putting a needle into the liver and draining the bile that way. Took my brother 30 minutes tops...and he was draining immediately. That's the ONLY procedure that seemed to go right for him. They did have to plan carefully (via CT images) where to place the needle, as he had a lot of tumors that they had to snake around...but once in, he drained into a bag nicely and bilirubin count come down almost immediately. Well worth it.

The only problem is, so they say and this may actually be true, is that putting anything into the liver leaves you susceptible to infection (which never happened to my brother and he was VERY bad).. so you'd need to monitor for chills/fever and the like. Other than that... it's a good and safe procedure, according to "me".

Every case is different, and like I said many times before, Jerry is not Steve so his case most likely WILL be completely different, and I don't profess to being anything even remotely close to a doctor...I've just done loads of research and "lived through it" with my brother..nothing like true life experiences.....so having said that....if what you're doing isn't working (stents)....maybe it's time to try something different that will ultimately be more comfy for Jerry and you (PCT)!

But ask the doc...they supposedly know better (more cynicism) SmileSmile If they know you're researching and looking into other options, it really does make them have to do their job better!! Sad, but true. Not saying docs don't do their jobs, but their "incentive" to try new things is always different than the patient's/family's incentives. Be weary. Don't take anything for gospel (even me, tee hee). Double check and double question everything.

And lastly...I think you're a remarkable and strong and loyal and deeply unselfish person who is standing by her hubby through "thick and thin", the bible calls it "in sickness and in health" SmileSmile Please be nice to YOU and believe that you are a very very wonderful and compassionate person who, right now, is doing the most important job of your life...helping to save and care for another human being. I really admire all you've done and been through and to be still so positive and willing to stand by him. Trust me, not everyone would, and you really are a 'saintly'!! Smile

Take care, and PLEASE keep me posted. Every now and then I'm actually good at 'listening' too!! SmileSmile

-- Compassionately, - Lynne


03/27/2009 07:11 PM
jgaulin
Posts: 17
New Member

Oh Lynne. You make me smile. I can tell you are an equally compassionate caring person. It is tough, this whole business.

I may have shared with you before that my Jerry is a wonderful man who has lived through a lot with me too. I have had hip replacement and a horrible smashed elbow once. He was helping me bathe, shaving my legs and even helping me put my panty hose on when I went back to work. We both broke into a hysterical laughing fit one day while putting those panty hose on me. We both fell onto the bed laughing so hard. He also encouraged and supported me to do whatever I wanted through our 39 years of marriage, cooking for me, making me lunch and just being there cheering me on so that I could go back to school or engage in something personally fulfilling.

He went through 10 years with me always there when my daughter was on drugs. We have been through parents serious illnesses on both sides and many other traumatic times. Of course, I will always be there for him doing whatever I need to do so that he's as comfortable as he can be.

When I am away doing something and I drive up to the house, I am always joyful and relieved when I see his car in the driveway. He is indeed the wind beneath my wings without whom I am nothing.

Yes, I can survive without him if I have to but it would be a very huge hole in my life, in my soul.

This man made me believe in myself after I had an abusive first husband. He took me like a plant that died and revived me into a blooming flower.

I have tears as I tell you this. I love him that much. We are going through a lot but we're together and that's the magic as we speak.

I am emotional this evening but we shall survive. I trust in God, that He is directing me to do what needs to be done and to ask the right questions, to pursue what I can and to leave alone what I need to leave alone.

I'm not sure how long Jerry can endure all of this. I really don't think he could endure the chemo and/or radiation. It would be a horrible thing for him so yes, maybe it's best not knowing at this point. He does have many good days and I don't want to take that away from him.

Again, you can't know how very helpful it has been to have your ear and your input. I value it and think about it and it spurs me on to ask more. Thank you for being there. I know you are still hurting a lot. It's never easy losing someone you love so much who is so a part of you.

Jan XO


03/31/2009 11:57 AM
lynyssa77
 
Posts: 74
Member

I love to hear about your 'current' relationship with your husband through this. As much as I did do with and for my brother, there's STILL things I wish I would have done differently. I guess it's just lessons for the next time (God forbid) that I am a caregiver for someone.

Keep the "hand holding" and "loving" going...those are the things that will bring him comfort and peace...no medicine will ever really do that. YOU are his drug!! SmileSmileSmile

You are right. I am in indescribable pain...still...and I haven't quite shaken it off yet...not sure it's something that can be shaken off anyway.

Was telling "Irene" (another woman on this site who lost her husband)..that I'm still contemplating on doing "something" for bile duct cancer patients (and caregivers)...but still not quite sure what it will be. Still thinking hard on that. I am running the Marathon for a "cancer" fundraiser...but that's temporary... I want to do something "ongoing".

It's funny...you'd think I'd know what people in that situation want and/or need...but I'm still not coming up with just the right thing to do to help others and thereby, honor my brother Steve. We'll see.

PLEASE keep me posted on you and Ronny...I can tell by your description he's one in a million...and YOU deserve him!!

Thank God for the good in your life....cuz it'll remind you just how much good you have...even when it does not seem so.

Take care,

--Lynne


03/31/2009 12:20 PM
jgaulin
Posts: 17
New Member

Wow! That's a wonderful thing you are aiming for to honor your brother. I know you've already begun with lending an ear to us still going through this terrible ordeal. Maybe that's just what you need to do, keep lending that sensitive and caring ear.

Yes, Jerry is a wonderful man. God was watching over me even back then to give me such a wonderful gift.

It sounds like you were very close with your brother and that's a rare thing in today's world. I, too, have that closeness with my siblings, but in particular, of the 5, closer to one of each. They each give me strength in their own caring ways with a sense of peace within every time I hear their voice or see their faces.

Your brother is very lucky to have you too, Lynne. Don't shortchange yourself. Like me, I know you did everything you could that was possible. Regrets perhaps but too small to care about. Your brother knew you loved him. That's all that matters.

I expect Jerry to feel good this week and next and then will be on bated breath after that to see how the stents hold up. They will need to be changed every 6-8 weeks even if they work so we shall see. He did manage to go fly his model today again. His friend picked him up and took him to a soccer dome for that. He's also planning on going to the Toledo Conference, a huge swap meet on Friday. He will be picked up 7:30 a.m. and not get home until very late.

It will be a long day for him and I let him go with some trepidation but, God love him, he has to be doing things he loves as long as he can. We will talk about some things he can do to take breaks and rest while he's out. Oh boy!

I am looking forward to Holy Week and all that goes with it. Am involved as a sponsor at my church for a young gal coming into the church. Easter Vigil on Saturday will be her full initiation. There will be a reception following with a welcome by the community. I love this part.

Also, on Good Friday, am attending a live reenactment of the stations at a church with friends. This will keep me busy while worrying about my husband being away.

God be with you for a blessed Holy Week and Easter, Lynne. Remember that your brother wants you to go on and be happy. Take care. XO


11/18/2009 08:08 AM
lynyssa77
 
Posts: 74
Member

I have not been on this page for some time (took some very necessary grieving time after my brother passed). But..I am back now and I want to be of help, or assist in any way, anyone else who may be going through this horrible ordeal. How is Jerry? Please know I hesitate to ask and do not wish to conjure up pain.. I'm just wanting to be an avenue for you to vent/release should you need it. I'm very much "in the know" with how you may feel and my heart is open to you. Much care, x o, Lynne

11/18/2009 04:21 PM
jgaulin
Posts: 17
New Member

Hello Lynn:

I tried to get back on with an update some time ago but had problems with my password - story of my life.

Well, the good news is that Jerry is still with me after 15 months of ups and downs, tears, hospital visits, etc., etc., etc.

The bad news is as of yesterday he has gone downhill pretty fast all of a sudden. He has been going downhill these past months but last 2 days have not been good.

We did go to lunch when his brother visited today but very little lunch on his part and he's been sleeping the rest of the day these past 5 hours. He has zilch energy and looks like Hell.

My stress level is pretty shot I think but continue to put one foot in front of the other. We signed on to Hospice 3 weeks ago now and they have been a Godsend taking a lot off my shoulders but just what I need them to take.

They finally did get a positive biopsy after 10 tries and 9 months. I have let it go that there is no cure for this type of cancer no matter what you do or where you go or what high specialist you might try. It is the same bottom line after all.

I have done plenty of research on all their websites, talked to a ton of doctors, pursued, chased, read volumes and decided not to put Jerry through travel, more probing and on and on when it is the same bottom line. No cure and he's going to die.

He went through one round of radiation and chemo pills with no real side effects but one I didn't know about. He has been hiccupping incessently for about 9 weeks now.

This poor, kind, dear, sweet man is tired. I need to let him go much as I dread being without him. I am ready and so is he. I want this to be over. I can't bear to watch him suffer any more.

He is not in pain but he is suffering for sure.

You said you took time off to grieve your brother. That is good, Lynn. You will never get over his loss or watching him go through his agony, but you do need to let it go and get on with your life.

I know I will grieve. Jerry has been my rock. He breathed life into me 41 years ago when he met me, a broken, damaged woman. And we have been married partners, lovers, friends for 39 years.

I can't even bear to think about life without him. He will be truly missed but I also know by looking at my widow friends that further life is possible, albeit different and I will have that same vacant look in my eyes as my friends and that missing piece of my heart.

Now just to get through this final dying part and all the ceremony that's necessary around that. I have been weepy all day today and can't seem to care about the ordinary droll things that surround me.

God bless you dear for checking up on us. And God hold you in the palm of his hand for caring for another through your own pain.

Jan XO


11/18/2009 04:30 PM
lynyssa77
 
Posts: 74
Member

Jan...I know all these emotions all to well and I soooooo feel for you. There does come a point for you and for him, where you just want the suffering to end. They are so miserable at the end. Steve was highly medicated during last month and gladly he was able to converse with us, but do nothing else. Last few days, he as in a coma. He did break out of it one day, 3 days before he died, and had a spurt of energy and a big big meal. After that, right back to coma and he passed shortly thereafter. I do suggest some type of laxative..passing stool was VERY hard and painful for my brother.. if I can pass that along and it helps..then good.

Jan Jan Jan.. wish I could say or do something to take away your stress, pain, fear, and tiredness. Let others help as much as possible, take breaks for yourself (both of you need YOU to take breaks for MANY reasons)..and just think about what you have to do today...just today. Dont' think about tomorrow or the future..just focus on what you need to do today.

It wont get easier or better until it's over..and then you can begin to heal. You cant imagine life without him, neither could I, and things will never be "normal" for you again...but you will find a "new normal" in which you are able to cope and function.

Stay close to friends and people who are attentive and sympathetic to you....you need that right now. I know I am always here if you need to talk, always.

Again...I'm so so sorry. Email me anytime!! lynyssa@att.net Lynne

You have my thoughts, prayers, empathy, sympathy, compassion and just general kick in the gut, raw feelings and emotions kind of support..OK????


11/19/2009 01:57 PM
jgaulin
Posts: 17
New Member

Hi Lynne:

So far, no problems with bowels which is a miracle given the meds and improper diet but thank God for small favors!

I will share with you that we have had an outpouring of love and support. We are very blessed that way. Visitors show up bearing homemade soups which is all he will eat - soup, soup, soup. I had to buy a steak last week and ate the whole thing myself. I was so hungry to bite into MEAT!!! LOL

I know this is not a laughing matter - any of it - but things like that keep me sane as well as the many wonderful friends in our lives. I stopped by a friends the other day to deliver something and I came away with, after having a cup of tea, a ton of love and caring. What more could one ask?

Of course, somewhere along the line here, I have also been disappointed by some who have not been there but I guess it's how you find out who your friends really are. On the other hand, in the grand scheme of things, thoughts like that are small and petty, aren't they?

Although we're taking one day at a time putting one foot in front of the other, I have done some planning down the road. I have to since I will be on my own. And this helps Jerry to know I have a plan. He is so worried about me and how I will manage. And it's my nature. I was an admin almost my entire working life and it's just in me.

You have been so helpful and don't even know how much my dear. I'll take raw, kick in the butt emotions any time over the alternative. You really are a dear.

I will add you to my email contacts and the distribution list called "Jerry updates." You can email me any time as well at jmgcps@aol.com

I pray for you, Lynne, that the grief, although will never truly go away, will get better for you. You will hear a song, be in a certain place that reminds you, or experience something that will bring that grief in play again, but accept that and do cry. It's healthy. Now I hope I can follow my own advice down the road.

I have thought about what it will be like but know I can't even imagine that emptiness until it arrives. Not looking forward to it but trying not to think about that part. As you said, focus on the moment.

Again, God bless you.

Jan XO

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